Review of the National Valuing Families Forum

An analysis of the survey results

Summary

A total of 42 people responded to the National Valuing Families Forum (NVFF) survey
although the response varied markedly between the regions.
Most regions appear to have quarterly meetings and the average attendance is
between 10-15 people.
More information is required about family carers of people with profound and
multiple learning disabilities or from BME backgrounds attending meetings.
What respondents liked about regional meetings:
o Having themes about relevant issues
o Participation by and interaction between those attending is encouraged
o A structure that allows for travel time, to catch-up with others and network
o Helped them feel better informed about policy and good and poor practice.
Problems with regional meetings are:
o Some regions struggle with low attendance at meetings.
o New blood is not being attracted to the NVFF network so that there is too
much reliance on a small group of people to keep things going
o Some respondents complained of poor management of meetings.
Respondents made suggestions for improving regional meetings:
o Make sure that meetings have a clear focus with themes
o Engage family carers via social media
o Improve representation from existing family networks in the region
o Improve the flow of information between regional forums
o Have sufficient time for proper discussion of issues that are relevant to carers
o Improve the management of agendas
o Have meetings at more convenient time for a greater number of family carers
o Getting more family carers involved in planning and running meetings
Many respondents were unclear about how their region is represented at the NVFF.
Regions varied in how they managed the flow of information between the NVFF and
the regional networks.
The positive aspects of how the regional network and NVFF work together are:
o Being able to compare practice and issues between regions
o Feeling inspired by colleagues from other parts of the country
o Enabling carers keep up to date with what is happening
o Information and views flow both ways
o Ensured the carer voice is heard in relevant consultations and policy making
Things that dont work as well are:

o Insufficient representation from minority groups

o Places a high demand upon representatives who are not paid for their time
o Information could be slicker (e.g. using a shorter, bullet point style)
Respondents felt their region makes a useful contribution to the NVFF.
There was some confusion about the existence and content of regional plans.


1. Introduction
Inclusion North, the organisation recently appointed to support the National Valuing
Families Forum (NVFF), has been asked to find out more about what is working and what is
not working well with the regional structure that feeds into the national forum. The
opinions of those people directly involved have been collected through an online survey
(paper-based versions were also available) and a small number of individual conversations.
This report summarises the results of this information-gathering exercise.
2. Who responded?
A total of 42 people responded to the NVFF survey. A breakdown of their roles and regional
affiliations are provided in Table 1 below.
Table 1: survey respondents by region and role
Region

Members

Carer orgs
& groups

Regional
reps

Coordinators
& hosts

Total

North East

North West

Yorkshire & Humberside

West Midlands

East Midlands

East

11

London

10

South East

South West

30

42

It should be noted that the survey information upon which this summary is based is heavily
biased towards East region not just because more people from that region responded than
anywhere else, but also because they completed the whole survey. The North West and
West Midlands provided useful information but only 2 of the 10 survey responses from
London were complete.
The review was designed in such a way that people were surveyed according to their role.
All groups were asked to provide information through a core set of common questions,
while additional questions aimed to glean information relevant to their respective role: for
example, coordinators and hosts were asked for information that related specifically to the
administration of the regional structure.
3. Regional meetings

Of the 5 regional hosts providing returns, 4 reported having quarterly meetings in the past
year while London only managed 1 on Employment and one sub regional Employment
session at a local family carer conference. The average attendance at 4 of the regional
meetings appears to be between 10 and 15 people. West Midlands reported an average of
between 30 and 50 people.
It was not possible to estimate the numbers of family carers of people with profound and
multiple learning disabilities attending these meetings and respondents from West
Midlands were the only ones to say what proportion of those attending meetings were from
a BME community: 2-3 attend regularly.
The paucity of information from a significant portion of survey respondents mentioned
above may in part be attributable to their low rate of attendance at regional meetings (see
table) with a majority saying they had not attended a single meeting in the past year.
Table 2: number of meetings attended by
respondents in the past year (excluding coordinators
and hosts)
Three

Two

10

None

25
37

Of the member and carers group respondents who had not attended any meetings, almost
half had not been aware of any meetings had taken place. Others mentioned complicating
factors such as the location, difficulties with travel, care commitments or clashes with other
activities. One despaired that, nothing is changing, if anything its worse, so I am picking
and choosing where I want to put my efforts, although it was not clear if this sentiment
related to the NVFF or life in general.
Planning meetings
Regional coordinators reported that in 2 regions meetings are planned at the preceding
meeting around topics that members are interested in. At the East region a planning group
shapes the agenda over the phone and via email, in the West Midlands there is a general
call for items, while the North West has a core agenda based on feedback from sub groups
and plan the afternoon around a theme chosen by members.
Of the 34 member and carers group respondents, 10 said they had been involved in
planning regional meetings, mostly by asking others for agenda items or raising agenda
items themselves.
Those who had attended meetings in the past were unanimous in saying they were asked
for feedback (some mentioned evaluation forms) and that they felt listened to.

What works well at meetings

The feedback from the survey about what works well at meetings focused on the content
and the opportunities for building relationships. Respondents appreciated having themed
meetings around relevant issues, led by speakers who are committed or influential, using
good visuals and an interactive style that is appropriate to the audience. Respondents felt
that a good meeting encourages participation by and interaction between those attending
and that everyone who wants to has a chance to speak. Well-structured meetings,
appropriately scheduled, also allowed carers plenty of time to travel, to catch-up with one
another and network. As a result respondents felt better informed about Government policy
and good and poor practice from around the region.
The meetings are of an outstanding quality. Chris Sholl arranges excellent speakers on
a wide range of topics. It is an invaluable opportunity to network with family carers on a
regional basis, to make contacts and share information. It is a chance to hear what
initiatives are happening in other authorities and to hear and share good practice.
What doesnt work well at meetings
Feedback about what is not working well was more about the set-up and conduct of
meetings. Some regions have a problem with low numbers including people not turning up
when they have accepted the invitation to attend. Indeed there was reckoned to be a
challenge in getting new family carers to be involved and to diversify the mix of type carers.
A symptom of low attendance is, perhaps, a suggestion that meetings in some regions are
unrepresentative and that discussions tend to be dominated hijacked for the airing of
personal views. This may also be a product of poor management of meetings as
respondents complained of a lack of time for completing business, feeling rushed, constant
interruptions and workshops described as haphazard at times.
Some people are feeling overwhelmed by the cuts so discussions can often end up with
people feeling negative, understandably.
What could be done to improve meetings
Respondents suggestions for what could be done to improve meetings were consistent with
their views about what works well and what works less well. Their comments represent a
shopping list of possible imporvements:

Make sure that meetings have a clear focus, perhaps by advertising a schedule of
themes
Better engagement with family carers via social media (belief that this had fallen
away since the Valuing People Team ended)
Find ways to improve representation from existing family networks in the region

Improve the flow of information between regional forums so that each is aware of
what others are discussing
Have longer meetings or meet more often so that there is sufficient time for proper
discussion of issues that are relevant to carers and so that everyone can have a say
Improve the management of agendas for example, streamline reporting so that the
only the relevant content is discussed them at meetings
Have meetings at more convenient time for a greater number of family carers (such
as weekends)
Planning for the future by getting more family carers involved in planning and
running meetings so that there is less reliance on a few individuals, thereby reducing
the likelihood that the network will fail once those people are no longer able to fulfil
those roles.

Main challenges are supporting families to get to meetings, we have overcome this by
trying to have as many mechanisms for families to contact us as we can think of facebook etc. and physically going out to local groups.
would be useful to have more frequent meetings then the amount of things that need
covering would not be so huge! We are working on succession planning and supporting
newer members to become involved in the planning of and running of meetings this is a
good thing.
4. National Valuing Families Forum
Of the 34 members and organisations or groups responding to the survey, only 14 were able
to say who represents their region at the NVFF. All but one of the 10 respondents from the
East Region were able to identify their representatives, but elsewhere knowledge about
Regional representation to the NVFF was low. Respondents were also unsure about how
their representatives were elected, and of those who could recall the method of election,
several suggested this had happened some time ago. This was confirmed by the Regional
Coordinators although the North West reviews its representation annually.
The 5 Regional Coordinators said their regions send only one representative to the NVFF
some had sent more in the past on the grounds of cost. The 3 regional representatives
that responded to the survey described their role as being to listen to local reps, and other
people in the region, take people's views and concerns to the national meetings and to
feedback information. Support is provided through the Regional Coordinators in the form of
administrative functions and as a conduit for gathering views and disseminating
information.
Asked how their representatives get views of people in their region, respondents from the
East and North West Regions were much clearer than their counterparts in other parts of
the country. The most commonly cited method was through regional meetings, although

several also mentioned through email requests, phone calls and periodic events and
surveys.
This has been difficult recently as our rep has missed a few regional meetings, but has
been in contact by phone and email etc. The chair usually briefs her and she also writes
the report for the national meetings, with comments added by others who attended.
Of the 3 regional representatives responding to the survey, one from London explained that
not having being elected meant that they felt they did not have a mandate and the
infrequency of meetings meant they relied on other networks to act as a sounding board.
A representative from another region said that she worked as part of a team which included
the regional chair and workers from Inclusion East who support the forum, to
encourage representation of every local authority area of the region and the regional
forum and people are asked to bring their issues and successes to share. We encourage
people to be part of local networks so that they can bring forth not just their views but
the views of other families in their locality.
All respondents from East Region said they had sight of reports their regional
representatives take to the NVFF while only 4 respondents from the other regions said this
was the case. Similarly, all respondents from East region were aware of feedback from NVFF
meetings through verbal reporting at regional meetings and in the form of written notes
circulated via email.
Good things about how the regional network and NVFF work together

Comparing practice and issues between regions

Feeling inspired by colleagues from other parts of the country
Helps carers keep up to date with what is happening
Information and views flow both ways
Making sure our voice is heard on relevant consultations and policy making

Its good for us to be able to feed in the views of our members to the regional forum
and know that the collective views of the region are taken to the national meeting. We
know that our families are represented at a national level through the NVFF at really
important places and meetings.
Things that dont work as well

There isn't enough BME representation / Don't hear the views of minority groups
Places a high demand upon representatives who are not paid for their time
Perhaps make information slicker (shorter, bullet point style)

Things don't work when too much is put on the agenda, or I feel representatives are
ignored or not taken seriously at national level!
Of those who felt able to comment, there was an overwhelming view that the respondents
regions make an effective contribution to the NVFF and members from the East and North
West regions mentioned the role of particular representatives in this regard. The 3 regional
representatives also felt that they get to talk about what matters to your region at the
NVFF.
5. Communication
Respondents indicated that information is communicated to members in their region via
email, and while the regularity of communication varied from weekly to once every few
months, those contributing to the survey conveyed a sense of feeling well-informed.
However, this only represents the picture in a few regions (East, London and the North
West) as there was little data available from other areas of the country.
Respondents were positive about the quality of the information they receive from the
regional networks, suggesting that it is useful, clear and helps them understand what is
happening regionally and nationally although a few questioned the ability of some family
carers to digest the volume of information that is sent to them. There was near unanimity
amongst those offering an opinion that the current arrangements are working well. Two
respondents suggested that having an NVFF newsletter or a Facebook page for sharing
information would be helpful.
However, Regional Coordinators suggested a need to update the regional network
databases and make efforts to attract new members ad organisations, especially younger
families.
6. Regional Plan
As Table 3 below shows, there was some confusion about the existence of regional plans.
Table 3: is there a regional plan?
Region

North East

Members responses
Yes (there
No (there
No
is a plan)
is not a
response
plan)
0
0
0

Coordinator responses

North West

Yes

Yorks & Humberside

West Midlands

Yes

East Midlands

East

6
0

2
2

No

Yes

London

South East

Yes

South West

A few of those who said there was a plan also said that these had been discussed at regional
meetings, while just 4 members, 1 carer group and 1 regional representative were able to
comment on the content, all saying they agreed with it.
There were even fewer comments about finances for the regional forums. One respondent
from East region said,
Well, everyone wants to continue meeting regionally ...so that is how most of money
spent. There is a huge amount of good will and free giving of time and resources to keep
the network going and this is freely given back at conferences and for consultations or
when an individual family in crisis and needs support/ info.
Similarly, there were only a few comments about what is working well and not so well with
the Regional Plans. The tenor of these contributions was positive, with two suggesting that
more finance ought to be available to fund travel and the regional representatives time to
attend NVFF meetings and to expand the reach of the regional forum:
It would be useful to have more meetings in the year but we understand that money is
an issue. In an ideal word it would be good if the plan could include holding meetings in
different parts of the region which could mean more people having the opportunity to
attend.
7. Other comments
The survey allowed respondents to make other comments about the NVFF and the regional
structure. The tenor of these comments was positive; the regional meetings in the East, the
West Midlands and the North West were deemed valuable and worthwhile with praise for
the role of particular individuals and organisations for driving the work of the networks
there.
The people who make the forum work do a sterling job, keeping us all informed and
involved. We would like to see more family carer networks attending from all parts of the
region but wonder if every area actually has a local network, it would be great if there
could be some work to develop really local networks, however we appreciate there is no
resource to support making this happen. Thanks for giving us the opportunity to feed in
our thoughts :) (East)
I think the Eastern region meetings are still highly valued and worthwhile. There is a lot
of engagement because the host organisation was basically built around the regional
forum, and therefore it has the trust of forum members. (East)

I find the meetings valuable & essential in keeping me & my area (Suffolk Coastal) up to
date. (East)
I would like to commend the excellent work of our coordinator Chris Sholl's. She has a
wealth of experience of learning disabilities and an empathic and supportive relationship
with family carers. (West Midlands)
I think if you look at the work plans for the Family Carers and the Self Advocates you will
see that the NW, led by the NWTDT and Pathways Associates is doing very well, and I am
proud to be a part of it. (North West)
Comments from a respondent in the South West hinted at a similarly positive past that had
been undermined by the loss of key personnel and a lack of resources.
It was working well, but not sure now with Jackie resigning. We need continuity and
someone whose role it is to do the meetings and represent our views nationally. Things
can always be better, but if you reduce the money coming to the regions you will not get
regional views. (South West)
While the picture in London was of an inability to establish an effective regional identity.
We are trying to look at our contacts again - and hopefully if family carers are not too
dissatisfied with cuts etc we might re-engage with them. (London)
I think things are happening in every London borough, but no-one is joining all this up, so
we beaver away in isolation. Solidarity and strength is need here in London. (London)